Cosentyx - Kat's journey

[Caroline]

Shame the Cosentyx didn't work it's magic for you Kat.
Are they off loading you from it straight away before they have decided what you are going to go on next? It sounds like a bit of an in limbo moment 

At least you get to be our guinea pig for this new stuff and we can get a first hand experience of it. 

Well John, as far as I can see from the reports of Kat, Cosentyx did its thing for her. The Arthritis seems to be less, and logically that is because of the Cosentyx. But that is not really meant for Psoriasis of the skin, so that is lagging behind.

I truly understand that Kat would like to get off the itchy scalp and the snow But with this medication I fear that will not be possible.

Now it is getting difficult. I also understand that her derm wants to help with the skin problems, but if the side effect is that the arthritis will pop up again, then I don’t know if that is smart.

[Kat]

Jim, I like that it's every 12 weeks! that's a plus for me!

John, I don't really like being a guinea pig The pharmacy that sends me the Cosentyx actually had a billing error so told me to call them next week to refill my order for my next injection. The dermatologist is waiting for my call after I hear back from the rheumatologist. So yes, I'm a bit in limbo at the moment. My next Cosentyx injection is due June 26th so I have a bit of time although I would need to get that order in before the last minute if I want them to send it.

I wish it had worked as well, but for now I'll use the Talconex -which she gave me another prescription for- to help with the itching and hopefully things will go better for me with the next treatment. I'll only order the Cosentyx IF the rheumatologist wants me to stay on it for now until they figure things out.

[Kat]

Just going to add pictures I took today since this is what the dermatologist saw today.  Not terrible actually, but she wasn't impressed.

Behind the ear I've used as reference



Along the hairline at my neck:



And right ear:



Better than when I began with Cosentyx but not where I should be it seems.  I know I personally would like for it to improve some more. 

[jiml]

It's certainly an improvement Kat but I'm sure it should have done more for you, if it was working as it should have .
I know you don't fancy being a guinea pig for the drug companies ... but the guinea pig stage is over now it's on general release but I think I understand your apprehension not wanting to be among the first to try a drug

[Fred]

But i assure you, you don’t want Psoriatic Arthritis.     I think Fred will agree with me... (yesssss )

Yep agree 100% You definitely don't want to get to the stage I did of not being able to lift a cup or dress yourself.  

@Kat Two things.

#1 I think it's still a bit early to stop Cosentyx. They do usually stop a bio if there is no clerance after 12 weeks, but you do have some clearance and it's not yet 12 weeks. I would give another month at least before trying something elese, but it's your choice.

#2 I agree 12 weeks between shots is great, but there is a negative side. Imagine you have just taken the shot and you get the flue or an infection, with 4 weekly shots you can stop but with 12 you will just have to ride it out. I didn't have too many problems whilst on Stelara (12 weeks) but did find sometimes I got flu like feelings after the shot for a while, but nothing like that with Cosentyx.

In Europe we always wait till the USA have tried things, and France waits even longer. So it will be interesting to see how things work out for you.

But whatever you choose, I wish you luck. It is difficult finding the right one for you, but I'm happy with a bit of psoriasis just to be rid of psoriatic arthritis.

[Kat]

I'm not totally sure which way to go. I am one that relies on the advice of doctors unless I have a strong reason not to and hope to hear from the rheumatologist today.

I didn't think of "why" 12 weeks is better or worse, only that it means I get longer before dealing with it. Still not sure I understand the reasoning. (I also don't know why one is 12 weeks and others are 4 weeks either so no surprise there ) I understand that at 12 weeks it is in my system for around that time and I guess at 4 weeks it's less time in my system so that if I get ill then I have a period where I have less drug in my system so perhaps a stronger immune system to fight with? I guess that makes sense.

The thing I struggle with is that although it doesn't look bad, I itch like crazy!! I'm tired of being out somewhere and going to the rest room just so I can scratch my head because I'm starting to wonder what people behind me must think about all my scratching. Glancing down and trying to discreetly brush the white stuff off my shirt or adding yet another top to my "don't wear in public" attire. And I'm sorry to complain but I am disappointed as I really had hopes this past year that being on biologics would take care of my stubborn scalp psoriasis. I don't want to try another one, but I also don't plan to give up. I am dealing with a bit of frustration today it seems.

Dermatologist just called wanting to know if I spoke with the rheumatologist yet. Guess I'll try calling them back today.

[Fred]

 And I'm sorry to complain

No need to apologise. If it helps then you go ahead and complain.

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr

[Kat]

Adding this picture for reference to my complaints:



I think because what is visible are small areas, even I have a difficult time remembering that this is all through my scalp.  Picture was taken today as I was sitting here posting and scratching.  After brushing off shoulders if I scratch for 5-10 minutes that's what it looks like.  And worse in the early morning as it's had overnight to build up so mornings are always a scratchfest.  That's actually the upper front of my shirt, the top around the neck gets even worse.  

And I always look about like that     Well some days better but some days are also worse.  The only difference is that when I go somewhere, I wear a light colored shirt so it's not as noticeable and I brush my shoulders off often so they can't just keep accumulating on my clothing.

I know that many of you relate (some of you are probably even saying it's not that bad and I understand that in a lot of ways I got off lucky with this awful disease) but this is an "out in public" time for me and I guess with that adding to being uncertain how to proceed right now, it's just getting to me a bit.

[Fred]

I can relate Kat. I used to get a lot on my shoulders years ago and it made me me feel very uncomfortable. Mrs Fred would often brush me down discreetly when no one was looking.

I hope you get something sorted.

[D Foster]

I can relate to it Kat. I just took the attitude in the end,if you have a problem with it then it's your problem not mine.